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Posts Made By:
Rolepaul
Forum:
her2group
05-14-2024, 09:18 PM
Replies:
1
Blood Brain Barrier Drug - also for Patty H
Views:
4,939
Posted By
Rolepaul
Re: Blood Brain Barrier Drug - also for Patty H
12 years and 4 months ago, Nina (my wife) had an Ommaya reservoir installed. Nina started Intrathecal Herceptin and Topotecan every week at 40 mg/0.4 mg for four times. The dose was moved to 80/0.4...
Forum:
her2group
05-14-2024, 06:46 PM
Replies:
0
An incredible result
Views:
317
Posted By
Rolepaul
An incredible result
So, November 2nd 2009, my wife, Nina, was told that she had a tumor larger than 2 inches (6 cm) in diameter in her brain. The high number of tumor cells in the csf were Her+. After two weeks of...
Forum:
her2group
07-26-2022, 07:16 AM
Replies:
26
Enhertu
Views:
8,835
Posted By
Rolepaul
Re: Enhertu
So Nina is my wife. November 2009 they found brain Mets. Local Raleigh North Carolina Onc said she was done. We went to multiple cancer centers around the country and decided on MD Anderson Cancer...
Forum:
her2group
12-13-2017, 09:21 AM
Replies:
235
Sticky:
Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastases)
Views:
228,762
Posted By
Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Marvin,
I can't imagine how you feel. Nina has done quite well. We are approaching the sixth year of her being on IT Herceptin and Topotecan. November 2 was the 8th anniversary of the discovery...
Forum:
her2group
11-16-2017, 08:46 AM
Replies:
24
How Her2+ BC patients develop brain metastases
Views:
16,230
Posted By
Rolepaul
Re: How Her2+ BC patients develop brain metastases
Nina had several lesions on her brain. When we did "whack-a-mole" radiation, we never were able to eliminate the lesions. When se did the IT Herceptin and Topotecan, we put all but one into...
Forum:
her2group
11-10-2017, 04:48 PM
Replies:
24
How Her2+ BC patients develop brain metastases
Views:
16,230
Posted By
Rolepaul
Re: How Her2+ BC patients develop brain metastases
Nina is doing great. She had some cyberknife treatments, but they did not work well. I think having the IT Herceptin with Toptoecan would be better for you as it was for Nina. Email me at...
Forum:
her2group
07-28-2017, 08:40 AM
Replies:
42
Phooey--Brain Mets
Views:
22,065
Posted By
Rolepaul
Re: Phooey--Brain Mets
Amy,
I am in the Denver area. Nina is 5.5 years remission from Brain mets from HER+. Call me at 269-598-2863 or email me at chemengmba@aol.com. We used Intrathecal Herceptin and Toptecan. Rocky...
Forum:
her2group
07-10-2017, 09:23 AM
Replies:
9
Any information on these trials would be helpful
Views:
8,978
Posted By
Rolepaul
Re: Any information on these trials would be helpful
None of the biolgicals goes through the blood brain barrier well. This is why Intrathecal administration is recommended by some individuals, including myself. If there is a drug that works...
Forum:
her2group
07-10-2017, 09:18 AM
Replies:
24
How Her2+ BC patients develop brain metastases
Views:
16,230
Posted By
Rolepaul
Re: How Her2+ BC patients develop brain metastases
Sorry to be off the board so long. There were other matters that were pressing. My wife had leptomeningeal Brain mets. She was treated with IT Herceptin and Toptoecan. She is in remission.
The...
Forum:
her2group
05-08-2017, 12:18 PM
Replies:
235
Sticky:
Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastases)
Views:
228,762
Posted By
Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Mario,
I am very sorry to hear this. Carol was an inspiration to everyone that had CNS involvement. My thoughts are with you in this difficult time.
Paul
Forum:
her2group
05-08-2017, 12:15 PM
Replies:
24
How Her2+ BC patients develop brain metastases
Views:
16,230
Posted By
Rolepaul
Re: How Her2+ BC patients develop brain metastases
Seven years after finding Brain mets on a MRI scan (November 2 2009) and five years after new brain mets and 20 to 25 spine mets (December 15, 2011) my wife is still alive. Doctors are now finding...
Forum:
her2group
11-11-2015, 11:41 AM
Replies:
58
Compiling Data on HER2 Brain Mets
Views:
36,804
Posted By
Rolepaul
Re: Compiling Data on HER2 Brain Mets
Duke is starting a new Intrathecal Study using Pertuzumab and Trautuzumab for Brain mets starting in February 2016. The dosing is about what I think is going to be very therapeutic. Only enrolling...
Forum:
her2group
10-01-2015, 10:16 AM
Replies:
5
Treating/monitoring central nervous system mets
Views:
6,211
Posted By
Rolepaul
Re: Treating/monitoring central nervous system mets
Here Im
looking for what standard monitoring looks like, to help brain mets patients
establish their own standard of care.
I have read of folks getting whole brain MRIs every 6 weeks or 3 months...
Forum:
her2group
10-01-2015, 09:00 AM
Replies:
5
Treating/monitoring central nervous system mets
Views:
6,211
Posted By
Rolepaul
Re: Treating/monitoring central nervous system mets
Let me know if you want to respond in this thread or the other one I just responded on.
Forum:
her2group
10-01-2015, 08:56 AM
Replies:
235
Sticky:
Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastases)
Views:
228,762
Posted By
Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Good questions, here are some answers:
Has anyone who has had IT Herceptin
treatment ever stopped it due to presumed disease eradication?
Not sure on this point. Nina was told they would not...
Forum:
her2group
09-28-2015, 12:08 PM
Replies:
8
Optimum Treatment After Resection of Brain Met
Views:
3,345
Posted By
Rolepaul
Re: Optimum Treatment After Resection of Brain Met
SRS can be done if there is further progression. Nina had hers done initially and then again 90 days after surgery. I think it is worthwhile to see if IT Herceptin will be available as Marvass...
Forum:
her2group
09-28-2015, 08:32 AM
Replies:
58
Compiling Data on HER2 Brain Mets
Views:
36,804
Posted By
Rolepaul
Re: Compiling Data on HER2 Brain Mets
My wife is part of the Intrathecal Herceptin study and I am one of the point people in getting this method of treatment at least looked at by physicians. I think the compilation of the studies would...
Forum:
her2group
08-06-2015, 09:11 AM
Replies:
7
Is it normal to get Brain Scans if experiencing headaches?
Views:
3,321
Posted By
Rolepaul
Re: Is it normal to get Brain Scans if experiencing headaches?
Get back to me if it is something bad in a PM.
Forum:
her2group
08-05-2015, 08:17 AM
Replies:
10
IT Herceptin needed in Canada
Views:
5,771
Posted By
Rolepaul
Re: IT Herceptin needed in Canada
Karina,
Sorry about not getting back to you earlier. I have spent 67 of 77 weeks on the road for work. The argument with your doctor should be that Ommaya reservoirs are commonly used for the...
Forum:
her2group
06-05-2015, 12:24 PM
Replies:
24
boyfriend d/x with stage 4 cancer
Views:
6,899
Posted By
Rolepaul
Re: boyfriend d/x with stage 4 cancer
Have his doctor get him epogen for the red blood cell count being down.
Forum:
her2group
06-05-2015, 12:14 PM
Replies:
60
Cancer in Spinal Fluid - given 6 months
Views:
18,169
Posted By
Rolepaul
Re: Cancer in Spinal Fluid - given 6 months
The plan is for you to get better. The plan is for you to show people how to get around this problem.
Forum:
her2group
05-25-2015, 08:43 AM
Replies:
20
Looking at Clinical Trials
Views:
6,092
Posted By
Rolepaul
Re: Looking at Clinical Trials
I need to ask if you can get care for the brain mets at Pasteur Institute in Paris. They are doing a clinical trial with Intrathecal Herceptin. A pouch is put in below the skin just above the...
Forum:
her2group
05-11-2015, 04:50 PM
Replies:
13
Spreading My Thanks
Views:
3,626
Posted By
Rolepaul
Re: Spreading My Thanks
Karen,
You are a wonderful support for those who are in dire need of someone to correspond to. I love hearing about your conversations with doctors when I get a call or message from you. You are a...
Forum:
her2group
05-07-2015, 10:47 AM
Replies:
60
Cancer in Spinal Fluid - given 6 months
Views:
18,169
Posted By
Rolepaul
Re: Cancer in Spinal Fluid - given 6 months
MD Anderson is a scary place and it is easy to get lost in the corridors. We stay at the Crowne Plaza and ask for the Cancer Center rate. Many of the hotels have a discount for patients. You...
Forum:
her2group
05-06-2015, 02:45 PM
Replies:
60
Cancer in Spinal Fluid - given 6 months
Views:
18,169
Posted By
Rolepaul
Re: Cancer in Spinal Fluid - given 6 months
Ted,
I agree that Denise did not have here brain mets found early enough and the work done was insufficient to treat her. I wish that she had the same options and outcomes as Nina. As always, I...
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